Update - Suzanne

[Guest guest]

Can I begin with both an apology and a message of gratitude?

I thank those of you who have emailed me personally to ask about Suzanne and I

apologize for not keeping folks updated. I know it must seem that I post only

when I need something and I often feel guilty about that.

So – the short story (for those of you that are new - BTW

welcome!) and a quick update. Suzanne has struggled with ulcerative colitis for

about two years now, and in February they removed her colon and constructed a

j-pouch. The pull through was done in one step which meant she did not need a

stoma or bag. She was re-hospitalized twice since the surgery. The first time

because of a partial blockage. That time was the worse because they put an NG

tube in her and she absolutely hated that. She actually ended up having some

anxiety problems because of it. She also got incredibly dehydrated rather

quickly once the throwing up began (which was the first sign there was a

blockage). Last week she got re-hospitalized again because of pouchitis. It was

a quick visit with just some IV fluids (because of dehydration again) and IV

antibiotics. Aside from those little post-surgery bumps in the road she’s

been doing wonderfully. We cannot believe it, but her frequency of bowel

movements is down to about 3 a day and they are more formed than they have been

in years. I must say though that this has drained me in ways I have never felt

before. Well, this and my mother who had a lobectomy for the removal of a

cancerous tumor two weeks before Suzanne’s surgery. Her surgery was

successful as well, although her recovery is a tough one. I have mentioned on

here before how there are times that I just cannot visit the site because I

need a “break” from the intensity of it all – and that is why

I have not been giving updates. I have seen that Barb will copy Suzanne’s

caringbridge when there is a major update and I thank you for that Barb. This

last little visit I think we were all too tired to even update the caringbridge

site.

I am so sorry that I am not going to be in Denver, and I am so excited for those of you

who are going there. The conference last year was truly amazing and I expect

this year’s will top even that.

I pray often for the collective group of PSCers and do believe

that someday the treatments (and cure) are easier for all involved.

LINDA

(Mom of Suzanne,

17; UC 1/04; PSC 3/04; j-pouch 2/07)

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